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Help!!! 25+yrs and still no one solved!!!

Posted by @1sugarpop in Heart & Blood Health, Jul 16, 2011

Been diagnosed with the following over many years and seeing many drs. but still no one has solved or been able to truly help. Can you help me? Please?

Chronic Fatigue
Possible form of Muscular Dystrophy (Carnetine Deficiency)
Postural Orthostatic Tachicardia Syndrome
Low Blood Pressure and TOO HIGH PULSE

Please please....someone put my puzzle together and help me....

Tags: Infectious Disease, sleep problems


Posted by @morodeoguy67, Jul 17, 2011

What's your symptoms I haven same problems can't figure it out it been 3 years of pain that is way above a ten at times and can't hardly walk with leaning against something its lie the docs want to brush u aside give it some crazy name and send ya out the door

Posted by Anonymous-a543b763, Jul 20, 2011

1sugarpop...what got my attention was the you have uncontrollable body jerking?


Posted by @wowags, Nov 17, 2011

check out

ISurvivealone likes this

Posted by @potsautisticadhdld, Aug 3, 2011

Have you checked out


Posted by @pinkfloyd2388, Aug 23, 2011

have you been checked for Ehlers Danlos?


Posted by @fallenangel, Aug 23, 2011

Look at all the symptoms of Cushing's Syndrome/Cushing's Disease....I am in the same boat, I have been bounced around from doctor to doctor with misdiagnosis after misdiagnosis, each turning out to be a symptom of something else. I am still on the search to uncover my true condition; but I too have low blood pressure/high pulse/Orthostasis...Chronic fatigue/Narcolepsy (they can't decide), and many many other symptoms. It's worth a shot to at least rule it out.


Posted by @elegiamore, Oct 26, 2011

There is no puzzle - you have described a moderate case of CFS/ME and POTS. Go to and the CFIDS ASsn in Charlotte as well as the Hummingbird Society in Australia to find decent treatment.. I am treated at the Cleveland Clinic, Ohio and Vanderbilt Univ., Nashville, for my POTS. I am treated by Dr. Charles Lapp, Charlotte and Dr. Nancy Klimas, Miami for my CFS.
To get a local doctor to believe you/treat you, you need to go through the testing mills at either CClinic or Vanderbilt for POTS and perhaps Lapp for a letter on your CFS. THEN find an open minding local person.
Bad part - I have had both conditions my entire adult life and am in my 50's. I have been given 18 mos to 3 yrs max to live from the heart damage caused by the POTS and have a port in my chest to receive saline x 2 a week as I cannot retain water I've drunk any longer (that took about 25 years to get that sick.) The CFS/ME has caused extensive organ damage also and significant cognitive failure.
Feel free to email me 1sugarpop. Good luck.


Posted by @wowags, Nov 17, 2011

check out

famor64 likes this

Posted by @wowags, Nov 17, 2011

I have Ehlers Danlos with hypermobility and everything I am reading here sounds so familiar to what I have been reading for EDSers. Check out and I also have fibro, chronic fatigue, severe pain, low blood pressure, jerking, muscle spasm, IBS, Haven't been tested for POTS but wouldn't doubt it. On facebook there is a page also. In serch box, just type in Ehlers Danlos Foundation. It is wounderul, very informative and very supportive.

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